What’s on Chromosome 7
Atlanta, Georgia (Senate District 40)
Jamari says “I’m cute!” and then flashes a mega-watt smile, his eyes closed shut by the intensity of his joy. He is charisma incarnate. He puts James Brown to shame.
Jamari has Williams syndrome, which means he is verbal but in a hard-won, non-traditional way. People with this developmental disability tend to latch on to what makes people laugh or smile, and Jamari has a repertoire of funny phrases and expressions that he deploys when he wants to connect with someone. James Brown and Barry White are two personal favorites of his. Once at a visit to the post office with his mom, Laura, Jamari put his head down on the counter, and said to the woman behind the desk in his deep voice, “I can’t get enough of your love, baby!”
Jamari’s mom is continually looking for ways to help him express his inner life. She knows he understands what he hears, knows he has intelligence and a sense of humor. But all of that is locked up inside of him and comes out in coded bursts that his mom translates. “Mom, mouth?” Jamari would ask her every time they drove to the hospital, using his code word for surgery, and expressing a latent anxiety about his medical condition. (Story continues below after slideshow.)
Laura Bondurant adopted Jamari in 2006 when he was two and a half. After his birth and initial diagnosis, doctors gave Jamari three months to live. Williams syndrome often includes cardiovascular and urinary tract defects and other health issues that can be life-threatening if left untreated. For much of his life, Jamari had an active do not resuscitate (DNR) order and at one point was placed in hospice. “Every day was an ‘Are we going to wake up today?’ day” says Laura. But soon after their move to Atlanta when Jamari was 10, a midnight trip to the ER at Children’s Hospital in Atlanta (CHOA) ended up changing his life expectancy for the better. At CHOA, doctors found that his ureters were blocked. After two surgeries, he was able to go off a variety of medications and to grow as a teenager should.
When Laura and Jamari lived in Idaho, they had a Medicaid waiver. “It was so easy to get—within six months you have it. I have never heard of people not having access to the waiver, until I moved to Georgia, where I was told it takes five or six years to get a waiver. I was told, ‘Well, you won’t get it until he’s an adult.’”
Without the waiver, Laura relies on a friend to pick Jamari up from school when she is at work. It also means Jamari doesn’t participate in community programs that would get him out of the house and interacting with other people or working on goals and basic life skills. Laura takes issue with what she perceives is the inequitable way the waivers are distributed in Georgia. “You can get the waiver sooner if you are down at the state house, showing your face to legislators.” But parents who work or don’t have transport or live in rural areas are at a disadvantage.
As a result, Jamari is still without any federal or state support or services. Any enrichment he receives is paid for out-of-pocket by his mom, who is a financially strapped single parent undergoing a career change.
What keeps them going? Their faith in God and trust in God’s care for them. When Jamari gets home from school he takes off his shoes and stands in front of the television; he rocks back and forth, his index finger pointed upwards as he watches his favorite DVD of a worship service from the Fort Benning chapel where Laura used to work. Jamari feels a connection to God and the spirit that allows him to just be as he is, joyful and confident and giving God his glory.
It is Jamari’s affinity for praise, for delightful connection that give Laura’s days meaning. “That’s the beauty of Williams syndrome. Whatever is on chromosome 7, it makes these kiddos and adults joyful; they love people. Yes, he doesn’t have the social filters we have, the ability to tone it down. Stranger or family, they all get the Jamari love treatment. But that love is what people remember him for.”
Writer: Moira Bucciarelli, Photographer: Lynsey Weatherspoon